Life

Here it is, Friday night. We went out as a family for a little while. Did a little shopping, mostly window shopping. But, I did get Alexis some art supply's. She wanted some Art canvas', chalk and ink to do some rubbings. So of course I couldn't say no to that.

She is quite the little artist. I'm so excited to see her blossom even more. That's all she wants to do in life, she is always doing something artistic or crafty!

I'm hoping some day that we will be able to have a larger home, maybe a room that is for crafts.
It's difficult to pull everything out each time. If we had a room just for the crafting, we could just leave it and come back to it.

I'm sure that I'd get more done than I do now. We just don't have the space.

I'm very grateful to what we do have, not owe any money on it at all. But looking forward to the day when we have a bigger place.

I know that God is working in us. And we have to be patient. It's all on His time. Sometimes that is hard, but then I remember all He went thru. And have to realize that He has a plan for us.

I keep thinking of all Alexis has been thru in the last year to year and a half. 2nd grade was pretty good. Minus the girl drama. That was terrible. I'm sure there will be more of that in the future....but hopefully not. I can certainly do without that! Alexis did make a fantastic friend. Unfortunately, she moved, but the experience was well worth it. She has those amazing memories.
Bully's are just insecure people. They must just feel so little, so they feel the need to hurt others feelings.

Third grade has been better for the most part. Minus the "boy" drama. Yes, that's right. Boys are already interested. I had to step in after I was told by someone else that Alexis was being touched inappropriately!

Alexis was diagnosed with some new things just last week. :(
So now she has: Chiari Malformation, Syringomyelia, Ehlers Danlos Syndrome, Hemihypertrophy, & Hyperplasia.

I can tell you that we go through enough with just her health. I envy those whose kids just get a cold, flu, virus or something little like that. When my kid gets sick, it can attack & hard.
Alexis got strep throat last year, it tested negative for over a month. Then finally when it did test positive, it blew into Scarlet fever. She was sick from May 13th to first week of July!

It's hard to see your child Chronically ill all the time. You can feel so alone. Like others don't understand...or just those few that are going through something similar.
I have some friends on FB whose children have similar situations. I can easily talk and listen to them.
They aren't judgmental, and don't tell me that I'm over reacting or geez well she "looks" fine! I hate that one the most.

You cannot see Alexis' health problems. Well you can see it in the Xray's, MRI's, etc. Or if you KNOW what your looking for and understand the diseases.

If you DON'T understand them, than of course you can't see it. Gosh, I just want to say, HELLO??? Where's your darn chiari, syringomyelia, EDS, hemihypertrophy degree???? Do you know what they are? Do you know how badly they affect her body? NO! And that's usually people who are perfectly healthy! Or have little health problems>>>> I'd never go around telling someone, OH well you LOOK Just fine, what's your problem!!! How RUDE!

Just sayin!

So the other night, 2 guys about college age were bullying my husband. YEP, well trying.
Anyway, we were at the store tonight. And Alexis and I were walking in front of Chris.
I hear this guy say, Hello, How are you????
I was thinking it was a guy who worked at Walmart but it wasn't .
Chris was behind us, didn't say anything
I almost said, Fine thanks....but
then the guy blurts out REMEMBER ME?????
Chris says Yes!
And I stopped to see who he was cause I didn't know what was going on...
they guy looked at me and realized I was with Chris. And walked away...........
Chris says, that was one of the guys who was making fun of him the other night at Ross.
Once the bully saw that Chris wasn't alone, he walked away.....GOSH I wish I knew that he was the bully before all that.
JERK I hate people who are so mean. I pity them.
I wanted to say so much! Alexis said, Momma I'm scared of him! I told her it was ok.
Frickin bully's at all ages. We don't have time for that type of drama at all!!!

W.H.A.L.E. (we have a little emergency) Car seat stickers for Children with special needs!

http://www.whaleprogram.org/


W.H.A.L.E.™ Program Logo Child Safety Seat Occupant Identification Program BannerSlideshow image

W.H.A.L.E.™ Program Home Page

Find a W.H.A.L.E.™ Program near you

W.H.A.L.E.™ Program Kits

Agencies that use the W.H.A.L.E.™ Program

About and History of the W.H.A.L.E.™ Program

Help support the W.H.A.L.E.™ Program
W.H.A.L.E.™ Logo and Carseat.

Motor vehicle crashes are the No. 1 killer of kids. Why? In many cases, children are either not properly buckled into their safety seats or parents don’t realize that a booster seat is vital to ensuring children fit safely in their vehicle’s seat belt. Don’t take a chance. Children may be riding in a vehicle with parents, grandparents, daycare providers or others. In an accident, if the adult in the vehicle is seriously injured or unable to talk, those responding to the emergency have no easy way of identifying the child. The W.H.A.L.E.™ Program is intended to give parents (or other caregivers) the the voice and tools to help emergency rescue efforts go more smoothly.

W.H.A.L.E.™ stands for “We Have A Little Emergency.” This car seat safety program was developed by Connie Day, a caregiver from Virginia. In the event of an automobile accident that incapacitates the adult driver and passengers, rescue personnel will have a difficult time identifying children riding in car safety seats. In some situations, these adults may not be related to the child passenger; therefore, conventional means of obtaining information will be useless. In these cases, W.H.A.L.E.™ can make a significant difference.

Most laws require that all youngsters under 4 years of age or up to 40 pounds must be seated and harnessed in an approved child safety seat when riding in a car. Now that same child safety seat can provide vital information about its young occupant in the unfortunate event that the driver of the car is incapacitated in a car accident. W.H.A.L.E.™ stickers are placed on both rear side windows of the car and on both sides of the child safety seat so that emergency personnel will know immediately that there is vital information pertaining to the child on the back of the car seat. The W.H.A.L.E.™ car sticker contains the child's name, medical history, names and telephone numbers of two guardians and up to three other emergency names and telephone numbers.

The program consists of three parts:

1. An Information Label is attached to the back of the car seat, which provides important information about the child, such as name, date of birth, medical history and who to contact in case of emergency. The label is placed on the back of the car seat where it is not visible from outside the vehicle. This ensures the privacy of this personal information.

2. Two W.H.A.L.E™ Car Seat Stickers are attached to the sides of the seat.

3. Two W.H.A.L.E™ Vehicle Stickers are attached to the rear/side windows of the vehicle. Each of these stickers depicts the W.H.A.L.E™ logo and will alert emergency personnel that the occupants participate in the program.


GET YOUR KITS or FIND A PROGRAM NEAR YOU

CHIARI SYMPTOMS CHECK LIST AND LINK

http://chiarione.org/symptoms.html



Symptoms List

The list below attempts to put symptoms in the order of importance but, it is difficult to say with certainty which symptoms are more common than others. There have been no formal or controlled studies of the percentages of patients that suffer from each symptom. In addition, symptoms may differ from patient to patient depending on where pressure is exerted (i.e. whether tonsillar descent is causing pressure on the brainstem or not, whether syrinx exists, etc).

In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below.

Headache (esp. if daily or at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremities
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Insomnia
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremities
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Drooling
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremities / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing
Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Hiccups associated with drinking carbonated beverages
Skin problems


Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

Families ~ ~

If you're reading this, then you probably know me. And know that it has been a horrible year for our family.

I would never want to re-live this year again. But, I am grateful to have made it through this year.

It was tough. I'm fairly newly married. And a blended family. I have a daughter and Chris has a son.

We are still making it through it all. Fortunately, Chris' cancer looks like it will be 98% cured. At least that is what we are hoping for.

Alexis on the other hand has 3 conditions that have No known cure. But we are dealing with it.
I'm very proactive. And will continue to do that.

We go to see the Ped's geneticist Dr. on Monday to see what else she may have.

With Chiari, seems like a lot of things go hand in hand. It will be good to get to the bottom of this and find out for sure what she may have so we can help her.

It has been a rough year all around.

Alexis had some trouble at school. I received a message from one of the kids' mothers telling me that Alexis is being inappropriately touched at school!

I about freaked out! I had a notion she might go thru this someday, but not at the age 9.

She did receive an apology from one boy. That was very nice, but none of the other kids did that.
And, 2 of the other mom's won't look at me or talk to me anymore at school when I'm there helping.

Whatever, as long as they keep their kids hands off my daughter then I'm happy!

Kind of does concern me about junior high and High School. Good thing her daddy keeps a gun safe filled!!!

ALEXIS' DRAWINGS JANUARY 2012

Dr. Richard Ellenbogen Seattle Children's Hospital

Profile
Richard G. Ellenbogen, MD
Richard G. Ellenbogen, MD, Professor and Chairman Department of Neurological Surgery

Hematology-Oncology, Craniofacial, Neurosurgery

On staff since October 1999

Children's Title: Professor and Chairman Department of Neurological Surgery, University of Washington School of Medicine

Academic Title: Theodore S. Roberts Endowed Chair of Pediatric Neurological Surgery Service Chief, Harborview Medical Center Residency and Fellowship Director UW Medicine Department of Neurological Surgery

""Love the patient more than you hate the disease.""

Richard G. Ellenbogen, MD, is chief of the Division of Neurosurgery and fellowship director of neurological surgery at Seattle Children’s Hospital; he holds the Theodore S. Roberts Endowed Chair in Pediatric Neurosurgery. He is professor and chairman of the Department of Neurological Surgery at the University of Washington School of Medicine and adjunct professor in the Department of Radiology. He is chief of neurological surgery at Harborview Medical Center. He is active on many local, regional and national boards and committees and served as the 2005–2006 president of the Congress of Neurological Surgery.

Ellenbogen has been involved with the American Society of Pediatric Neurological Surgery and is an active member of the American Association of Neurological Surgeons. Ellenbogen’s clinical practice focuses on pediatric and adult brain tumors, craniofacial anomalies, Chiari malformations, trauma, minimally invasive brain surgery and spine surgery. He serves as director and instructor for the Cerebral Vascular Anastomosis Laboratory of the Congress of Neurological Surgeons. His research includes work with Dr. Michael Bobola on genetic mutations in brain tumors that cause resistance to chemotherapy, and work with the university Nanotechnology Brain Tumor Research Group on imaging brain tumors using nanoparticles. He served in the U.S. Army, attaining the rank of Lieutenant Colonel, and received the Bronze Star, the Meritorious Service Medal, the National Defense Service Medal and the Army Reserve Medal. Ellenbogen has editorial duties on several journals, and he has published three books, including Clinical Neurosurgery and Principles of Neurosurgery, a basic textbook of neurological surgery. He has authored numerous articles, book chapters, and presentations.
Read full biography
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Overview
Awards and Honors
Publications

Overview

Board Certification(s)
Neurological Surgery
Medical/Professional School
Brown University Warren Alpert Medical School, Providence
Residency
Children's Hospital Boston, Boston, Neurological Surgery
Brigham and Women's Hospital, Boston, Neurological Surgery
Clinical Interests

Pediatric and adult brain tumors Endoscopy/minimally-invasive brain surgery Congenital disorders of the brain and spine (pediatric and adult) Cerebrovascular disease in children
Research Description

Molecular imaging/nanotechnology; hind brain abnormalities/CSF physiology; and genetic mutations in brain tumors.
Research Focus Area

Neuroscience / Neurodevelopment

Dr. Samual Browd Seattle Children's Hospital

Profile
Samuel R. Browd, MD, PhD
Samuel R. Browd, MD, PhD

Oncology, Neurosurgery

On staff since July 2007

Research Center: Center for Integrative Brain Research
Browd, Samuel R.

Samuel Robert Browd
Dr. Samuel Browd is an attending neurosurgeon at Seattle Children’s Hospital, Harborview Medical Center and the University of Washington Medical Center.

Dr. Browd received his M.D., Ph.D. through the Medical Scientist Training Program at the University of Florida in 2000. He then undertook a seven-year Neurosurgery Residency at the University of Utah, and in 2007-2008 completed his Pediatric Neurosurgery Fellowship Training at the University of Washington/Seattle Children's Hospital. While at the University of Utah, he also completed a research fellowship focusing on functional magnetic resonance imaging.

Clinical Interests
Dr. Browd's specialties are with children who have hydrocephalus, brain & spinal cord tumors, pediatric cervical spine, spina bifida, chiari malformations, spasticity.

Research Interests
Dr. Browd's research interests include complex, high resolution medical imaging including Functional Neuro Imaging; clinical trials and patient outcome; craniopagus twins; cervical spine issues related to down syndrome.

Languages
English

Expertise
Neurosurgery

Stories
Q-and-A with Samuel R. Browd, MD, PhD

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Samuel R. Browd, MD, PhD

Samuel R. Browd, MD, PhD
What’s the best thing about working at Seattle Children’s?

The best thing about working at Children’s? The kids! Going to work every day with the idea that you can hopefully fix a problem that has brought a child into the hospital is exciting and never gets old. You wake to each new day with the hope of returning kids to health and the promise that their future is bright and free of disease.
What do you like most about the work you do in the Neurosurgery Division?

Neurosurgery is inherently complicated, and the diseases are among the most difficult to treat. The challenge of working on the brain and spinal cord and the limitless potential for recovery that kids demonstrate make neurosurgery so exciting and rewarding.
What makes Children’s Neurosurgery Division unique?

Our division is unique in regard to the breadth of experience that is brought to tackle these complicated neurosurgical diseases. Each member of the faculty has specific areas of expertise that makes the group well rounded and able to tackle any neurosurgical disease. Plus, we are a fun group, and our excitement about neurosurgery is evident in our work every day.
What made you want to come to Children’s?

I came to Children’s and the University of Washington Department of Neurosurgery to participate in their world-class program of patient care and research. A hospital works like a team, and you need good coaches and players to make the team successful. Regarding research, Children’s and UW are on the forefront of discovery, and I hope to contribute to these successes.
What do people say when they find out you work here?

I have not met anyone who either hasn’t come to Children’s with their own kids or knows someone who has been treated. The community is very supportive of Children’s, and the reception I have received has been great. I certainly feel part of the Children’s family. I look forward to contributing to the remarkable medical care offered at Children’s and working with the caring and compassionate staff that make such an amazing hospital run day to day.

Alexis' MRI ~ All 3 put together, The Cervical, and the Thoracic

Chemo

Alexis' MRI Photo's from January 10th 2012

Alexis' CaringBridge website! Please check it out.

http://www.caringbridge.org/visit/alexismeyer/journal

Alexis' caringbridge website on her battle to fight Arnold Chiari Malformation, Syringomyelia and Scoliosis.

Hemihypertrophy

http://www.bestbets.org/bets/bet.php?id=1098

Hemihypertrophy is also known as hemihyperplasia. The terminology hemihyperplasia seems more accurate as the pathological process involves an abnormal proliferation rather than an increase in the size of these cells (Cohen). Asymmetric overgrowth of unknown aetiology may involve the whole of one side of the body or it may be limited in extent to one limb or a side of the face. There may be associated asymmetric hypertrophy of internal organs. The reported incidence of hemihyperplasia is 1 in 86 000 live births (Tomkooya). Hemihyperplasia may be an isolated finding or it may be associated with other syndromes such as Beckwith-Wiedmann, Klippel-Trenaunay-Weber, or McCune-Albright syndromes. Predisposition to neoplasia (cancer) in isolated hemihyperplasia is well known, but the exact risk is not well documented.

BLOG TEMPLATES!

http://hotbliggityblog.com

http://www.thecutestblogontheblock.com

Pancit Bihon Youtube video

http://youtu.be/B0wsZjPTyYg

http://www.filipinocooking.net/pasta-noodles-recipes/pancit-palabok-recipe

http://www.filipinocooking.net/pasta-noodles-recipes/pancit-palabok-recipe

Pansit Palabok

Pansit Palabok is made from rice flour noodles topped with crab sauce, eggs, shrimps, squid, garlic and more.
Estimated preparation for toppings: 1 1/2 hours
Estimated cooking time for sauce & noodles: 40 minutes

Pansit Palabok Ingredients:

Palabok Noodles / Sauce

• 1/2 kilo miki noodles
• 1/2 kilo small crabs
• 5 cloves of garlic, minced
• 1 onion, chopped
• 2 tablespoons of atchuete seeds or oil
• 2 tablespoons of patis (fish sauce)
• 4 tablespoons of cornstarch, dissolved in water
• 1 teaspoon of monosodium glutamate (MSG)
• 1 1/2 cups of water

Palabok Toppings

• Tinapa flakes (smoked fish)
• Cooked shrimps, shelled
• Squid adobo, sliced into rings
• Pork chicharon, grounded
• Spring onions, chopped
• Hard boiled eggs, shelled, sliced
• Fried garlic, minced
• Fresh calamansi (lemon), sliced

Pansit Palabok Cooking Instructions:

• Extract fat and meat from clean crabs, set aside.
• Pound crab and extract juice on 1 1/2 cups of water
• On a pan, sauté garlic and onions until golden brown then add crab fat, crab meat, 1 1/2 cups of crab wash, patis and MSG. Bring to a boil and simmer for 10 minutes.
• Add corn starch and continue to simmer while constantly stirring until thick.
• Put miki noodles in a strainer and dip in boiling water for 5 minutes or until cooked.
• Lay drained noodles on a platter and pour the palabok sauce. Garnish with toppings and serve.

Read more: http://www.pinoyrecipe.net/pancit-palabok-recipe/#ixzz1ieumfqPz

HALO HALO DELICIOUS!

 http://www.allfavoriterecipe.com/guinataang-halo-halo

Guinataang Halo-Halo (Coconut Milk Medley)

Guinataang halo-halo or coconut milk medley or “binignit” in Bisaya, is one of the merienda that we usually have during Lenten season back in the Philippines.  We have this ginataang halo-halo every afternoon especially during holy week, this is our family tradition.
Ingredients :

• 5 cups fresh coconut milk (or 1 can coconut milk, diluted with 4 cups water)
• 1 pandan leaf
• 1/2 cup sugar
• 2 gabi (taro root or yam), cut into cubes
• 2 ripe saba (plantain bananas), cut into cubes
• 1 medium sweet potato, cut into cubes
• 1/2 cup preserved langka, drained and cut into strips
• 2 tbsp. quick-cooking tapioca

(Cooking Conversion Chart)
Cooking Procedures :

1. Simmer coconut milk and pandan leaf over moderate heat.  Stir in sugar until dissolved.
2. Add sweet potato, gabi and saba(plantain bananas) into simmering coconut milk and cook for 20 minutes or until soft.
3. Add langka and tapioca.  (If using regular tapioca, add it with the sweet potatoes because it takes longer to cook.)
4. Tapioca is cooked when it turns clear.  If a white spot is still visible in the center, cook until it disappears for about 5 minutes more.  Taste and add more sugar if necessary.
5. Serves 6 to 8.

VARIATION:
Add bilo-bilo after tapioca is fully cooked.  Guinataang Bilo-bilo (Glutinous Rice Flour Balls in Coconut Syrup)

To make bilo-bilo, combine 1 cup glutinous rice flour with 1/2 cup water, mix until well blended, knead a few times until smooth.  (Follow Bilo-bilo procedure, see recipe.) Add sticky rice balls to simmering coconut milk. Remove from heat when all balls float to the top.
Tagged with: guinataang • halo-halo
Filed under: Merienda and Snacks

Lumpia Recipe (Lumpia Shanghai)

In Filipino, lumpia are eggrolls that are deep-fried like a wrapped stick of meat. Lumpia is aspring roll filled with ground or finely mince of pork, beef or vegetables then served it with sweet and sour sauce. Sometimes I call this recipe lumpia shanghai.
This lumpia recipe or lumpia shanghai is one of the filipino recipes that I usually make, whenever we have a party or get together with friends, especially filipino friends, at home. One time, I was busy cooking filipino recipes, and one of them is this lumpia and my friend arrive early and help me in the kitchen. She notices that I my lumpia wrapper won’t stick together whenever I cook. I’ve tried everything from water, to egg wash and other type of paste but still no avail, the wrapper still broke loose.
Since she is also a good cook; she gave me the technique in making these wrapper sticks together. And guess what she told me, just used the egg white as a paste in binding this wrapper together. And it works! Since then, my filipino lumpia shanghai servings looks better and taste good.
Thank you Carmelita for the great tip!
Ingredients :

• 1 lb. ground pork
• 1 cup chopped shrimps
• 1/4 cup finely chopped onions
• 1/2 cup finely chopped carrots
• 2 whole eggs
• 3 tbsp. soy sauce
• 3 dashes of sesame oil
• salt and pepper, to taste
• lumpia wrapper
• vegetable oil, for frying

(Cooking Conversion Chart)
Cooking Procedures :

1. In a bowl, combine all ingredients. Mix until well blended.
2. Wrap into thin rolls in lumpia wrapper. Fry in deep hot oil.
3. Drain on paper towels. Transfer to aserving platter. Serve with your favorite catsup or make your own Sweet and Sour Sauce recipe.

Have you try This Recipe:

• Picadillo Recipe
• Beef Asado III (Japanese Style) Recipe
• Pork Afritada (Braised Pork in Tomato Sauce) Recipe

Tagged with: Appetizer • deep fry
Filed under: Appetizer • Pork

Filipino Recipes!

http://www.allfavoriterecipe.com/

Filipino Recipes! 

SIOPAO ~ ~ Filipino recipe YUMMY!!!

Siopao is a favorite Filipino snack, consisting of a meat filling inside a steamed rice-flour bun, a larger version of Chinese dumplings. It is usually sold as part of dim sum by Chinese-style restaurants. 

Asado siopao is filled with diced pork or beef cooked in soy sauce (with salt and sugar added to taste); its taste and texture a bit like adobo. Indeed, a good use for leftover adobo is siopao filling.  Bola-bola is a local term for Chinese-style filling; chopped pork and Chinese sausage baked with egg and flour to a consistency akin to meatloaf.

Estimated cooking time: 3 hours and 30 minutes

Siopao Ingredients:

• 6 cups flour
• 1 package active dry yeast
• 1 lb cubed pork loin or chicken thighs
• 1 cup white sugar
• 2 teaspoons cooking oil
• 1 cup lukewarm water

• 1/2 cup boiling water
• 6 hard-boiled eggs
• 2 green onions
• 4 teaspoons light soy sauce
• 4 teaspoons brown sugar
• 4 teaspoons oyster sauce
• 1 teaspoon cornstarch, dissolved in 2 t. water
• 2 cloves garlic
• 3 teaspoons salt
• 6 teaspoons baking powder

Siopao Cooking Instructions:

• Siopao Dough:
  
  • Mix flour, salt and baking powder in a medium bowl, set aside.
  • In another bowl dissolve yeast in lukewarm water then add 1 cup of the flour mixture.
  • Mix thoroughly.
  • Cover with a cloth and let rise 1 hour.
  • Meanwhile, dissolve the white sugar in the boiling water.
  • Stir well then let cool to lukewarm.
  • Pour into the yeast mixture, then add the rest of the prepared flour mixture.
  • Stir to blend well.
  • Grease a large bowl.
  • Turn dough out onto a floured board and knead for 3 minutes-you want your dough smooth, not sticky.
  • Place ball into bowl, turn once and cover with a damp cloth.
  • Let rise 2 hours or until doubled.
  
  

• Siopao Filling:
  
  • Saute the garlic and onions in a small amount of oil in a wok.
  • Add meat and stir fry for 1 minute or until meat is no longer pink.
  • Add soy sauce, oyster sauce and brown sugar.
  • Pour in the dissolved cornstarch and stir fry quickly until meat is glazed well.
  • Remove from heat and let cool.
  
  
• How to make Siopao:
  
  • Punch down dough and knead on a floured board for 3 to 5 minutes.
  • Divide dough and roll each half into a 12×2 inch log.
  • Cut each into 12 pieces, making 24.
  • Roll each piece into a ball using your hands then rolling it flat into a 3 inch diameter circle.
  • Dust with flour if needed to prevent sticking.
  • Place 1 slice of egg into center of dough round, then 1 T. of filling with sauce.
  • Gather sides of round, pinch together and twist.
  • Place pinched side down on parchment paper and place in steamer.
  • Repeat until done.
  • Cover with a damp cloth and let rise for 1 hour.
  • Steam Siopao for 20 minutes.
  • You can freeze cooked Siopao, simply re-steam for 10 minutes.

Filipino Food

Traditional Filipino food recipes that are simple to cook and always a pleasure to serve and eat... dishes that are always welcome on the dining table. Filipino food consist mostly of vegetables, seafood, dairy, meat and rice. Like Philippine fiestas, Filipino recipes are rich in flavor & color.

Filipino culinary arts is greatly influenced by Chinese, European, American, Arab and Asian cuisines. A fusion of various recipes adopted from earlier traders, Asian immigrants and former colonizers.

Before the Spaniards colonized the Philippines, the country's cuisine consisted of root crops, game, vegetables and seafood. Filipino food recipes then was almost always either boiled, roasted or broiled. Foreign trade brought in all kinds of spices and plants to the Philippines. And like the Filipino today, its cuisine is a gastronomic feast from different countries and cultures - from east to west.

Filipinos have embraced as their own cuisines form other countries like the noodles from the Chinese, rice and meat dishes from the Spaniards, fast-food from the Americans and even spaghetti from the Italians. All these now form part of the Philippine cuisine - with the Filipino touch, of course.

There are however many Filipino recipes from each region of the Philippines with each region having its own unique specialty. The Ilocanos from the north are known for their Pakbet - a simple but nutritious vegetable dish. While the Bicolanos are famous for their Bicol Express a hot and spicy dish simmered in coconut milk. Overall, nothing beats the fame of the tasty pork and chicken Adobo, a dish the Philippines is known for throughout the world.

UltraSound January 5th 2012

Alexis had her UltraSound today.  January is a busy month for the Dr. appt.'s. 

She saw Shriner's Children's Hosp. on January 3rd.  They want to send Alexis for some more tests.  

The UltraSound is to test for Wilms Tumor.  Praying, to rule OUT this.  

Another thing that they think Alexis has is called HemiHypertrophy.

Alexis' legs are different lengths.  Also, Alexis was born with birth marks all over her face, head, neck and under her arm.   When she was born, they were a dark purple.  We were told they were called Port Wine Stain.  

So, with the hypertrophy & birth marks, makes them think that there might be other things wrong with Alexis. 

I've posted all the other things related. 

It is scary.  Hard to be a mother, watching your child suffer and going through this stuff.  

I keep wondering why is this happening to Alexis?   I just can't explain what it is like....having to take your kid to the Dr. all the time. 
Having to come up with an explanation to tell your child.  Then being a STRONG parent and not break down and cry.  

It SUX!  It's not fair.  But we try to keep our heads up and our spirits high. 

I usually try to treat Alexis to something fun after an appt.  And even sometime the night before. 

Since last year, we have been getting our pedicures done together as a girls night out before the MRI's that she has. 

The other night, Alexis says,  Boy, I am in need of a pedi!  LOL!

 

Measuring Alexis' width of her legs!  Shriner's

New X-Ray Tech, but she was nice :)

Alexis is a pro at getting X-rays done

Alexis' Dr.'s are the 2nd and 3rd Dr.'s from the left~  Dr. Ling is her Neuro-Surgeon the 3rd one on left.

 

 Related Disorders


Beckwith-Wiedemann Syndrome
Beckwith-Wiedemann Syndrome (BWS) is a congenital overgrowth syndrome, which can affect all systems of the body. In the great majority of cases it appears to be an isolated event with no known relatives, but there is some evidence that the condition can be inherited.


 

Wilms' tumor Wilms' tumor is a rare type of kidney cancer that affects children. It causes a tumor on one or both kidneys. Having certain genetic conditions or birth defects can increase the risk of developing Wilms' tumor. Children who are at risk should be screened for Wilms' tumor every three months until they turn eight. Possible signs of a kidney tumor include a lump in the abdomen and blood in the urine. The tumor is usually diagnosed and removed in surgery. Other treatments include chemotherapy, radiation, biologic therapy or a combination. Biologic therapy, or immunotherapy, boosts your body's own ability to fight cancer. Most children with Wilms' tumor can be cured. National Cancer Institute This is one family's account of having a Wilms Tumor diagnosis. Please click the link for an on page report of their Journey. Some browsers require permission to open active content, you must approve this to see the text. One Family's Journey With Wilms Hepatoblastoma Hepatoblastoma is a rare tumor (an abnormal tissue growth) that originates in cells in the liver. It is the most common cancerous (malignant) liver tumor in early childhood. Most hepatoblastoma tumors begin in the right lobe of the liver. Hepatoblastoma cancer cells also can spread (metastasize) to other areas of the body. The most common site of metastasis is the lungs. Hepatoblastoma primarily affects children from infancy to about 5 years of age. Most cases appear during the first 18 months of life. Hepatoblastoma affects white children more frequently than black children, and is more common in boys than girls up to about age 5, when the gender difference disappears. Although the exact cause of liver cancer is unknown, there are a number of genetic conditions that are associated with an increased risk for developing hepatoblastoma. They include: Beckwith-Wiedemann syndrome Familial adenomatous polyposis Hemihypertrophy Klippel-Trenaunay Syndrome The K-T syndrome is a rare congenital malformation that is usually characterized by a triad of symptoms: 1.)Port-wine stain or "birthmark" (cutaneous capillary malformations), 2.)Soft tissue and bony hypertrophy (excessive growth of the soft tissue and /or bones), 3.)Venous malformations & lymphatic abnormalities.  K-T usually is limited to one limb, but may occur in multiple limbs and/or head or trunk area. Internal organs may also be involved. Each case of K-T is unique and may exhibit the above characteristics to differing degrees. http://www.k-t.org/ Cutis Marmorata Telangiectatica Congenita (CMTC) A rare condition that mainly affects the blood vessels of the skin. It is usually seen at birth or soon after. CMTC looks like a purple, marble-like pattern on the surface of the skin. This pattern is similar to the fishnet-like blotches seen in young infants when they are cold. In children with CMTC, the marbling is more severe and always visible. The marble-like skin pattern may be limited to a certain part of the body (localized CMTC) and there may be slight depressions in the skin. CMTC also may be distributed over large areas of the body (generalized CMTC) CMTC can affect the arms, trunk and face, but usually occurs on the legs. The skin pattern may become more visible with vigorous movement, crying, or with exposure to the cold. Related abnormalities are found in up to 50% of patients with CMTC. These abnormalities include vascular conditions such as port wine stains (red-colored patches that are present at birth) and hemangiomas (non-cancerous, blood-filled growths that appear in the first weeks of life). Other associated conditions include: Overgrowth of extremities Problems with teeth Glaucoma (increased pressure of the fluid within the eye) Delayed psychomotor development http://www.cmtc.nl/HTML/eng_start.php  Proteus syndrome Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms.  This condition was first identified by Michael Cohen Jr., DMD, PhD., in 1979.  In 1983 a German Pediatrician, Hans-Rudolf Wiedemann, named it proteus syndrome, for the Greek God Proteus “the polymorphous” presumably because of the variable manifestation in the four unrelated boys first identified with the syndrome.  At this time there are over 120 documented cases worldwide.  However, not all cases of proteus syndrome are documented, therefore it is unknown how many individuals have this syndrome. The syndrome became widely known when it was determined that Joseph Merrick(the patient depicted in the play and movie "The Elephant Man") had severe Proteus syndrome rather than neurofibromatosis as was initially suggested. Other associated conditions include: Overgrowth, asymmetry, and gigantism of the limbs Increased size of an organ, or the body, or bones (hypertrophy) Raised rough Skin (verrucous epidermal naevi) Deep lines and overgrowth of soft tissue on the soles of the feet (cerebriform connective tissue nevus) Patches of overgrown blood or lymphatic vessels (vascular malformations) Local overgrowth of fat (lipomas) or undergrowth of fat Various tumors are more common in patients with Proteus syndrome, but most are benign Deep venous thromboses (blood clots) and the lodging of these blood clots in the lungs (This can be life threatening) http://www.proteus-syndrome.org/  Macrocephaly-Capillary Malformation Macrocephaly-capillary malformation (M-CM) is a multiple malformation syndrome causing abnormal body and head overgrowth and cutaneous, vascular, neurologic, and limb abnormalities. The disorder is assumed to have a genetic basis, but the precise genetic cause for M-CM is unknown and diagnosis is currently based on clinical observations. Though not every patient has all features, commonly found signs include macrocephaly, congenital macrosomia, extensive cutaneous capillary malformation (naevus flammeus or port-wine stain type birthmark over much of the body; a capillary malformation of the upper lip or philtrum is seen in many patients with this condition), body asymmetry (also called hemihyperplasia or hemihypertrophy), polydactyly or syndactyly of the hands and feet, lax joints, doughy skin, variable developmental delay and other neurologic problems such as seizures and low muscle tone. http://en.wikipedia.org/wiki/Macrocephaly-capillary_malformation	Related Disorders We have no medical background, just personal experiences that we can share with you

A LOOK BACK @ 2011 & HELLO 2012 HAPPY NEW YEARS!

Ahhh, 2011 I'm not a bit sad to see you go.

2011 was definitely a life experience for all of us. Chris & I were married for over a year. In January 2011, our 1st bad experience was devastating. Our family closest to us knows what happened. This happened and 2 weeks later, learned that Alexis had scoliosis. Starting us on our spiral of life long health problems for her. I didn't think things could get worse, & boy was I wrong.

Scoliosis 1st, her brain surgery, traction on her spinal cord, Scarlet fever from May-July, endless hospital visits, 2 MRI's, over 6-7 xrays, 2 cat scans, too many blood draws and IV's.

And thru all this we were dealing with the government/immigration, trying to get his green card.

Sept. 24th 2011 Chris got his green card! YAY! Things are looking up, right?!?!?!

October 8th, Alexis celebrated her 9th birthday. And we had so much to be thankful for. Things were looking better.

And that night, was the night, Chris dropped the bomb shell that he was afraid of this mass growing bigger and bigger, he had waited a whole year, watching this mass grow. Hoping that it would go away. Until it was too big to ignore.

Finding out that Chris has cancer. All this happened so quick.

Chris had ultra sound, Cat scan and Xrays, blood work and IV's. Then Surgery.

After recovering from that, then on to Chemotherapy.

Ahhh, I was thinking is this really happening??? Why us??? Why now?

Cancer sux, and Chemo is terrible. God Bless anyone going through this!!!!!!! It is terrible, that's all I can say.

My heart breaks for anyone suffering from this.

My prayers are with anyone who has gone thru this or is going through this.

So what good has happened with us???? Hhmm, let me think....

Well, our hearts have gotten bigger and stronger. Our family has gotten stronger.

We have been through a lot, but obviously God thinks that we are strong and can make it through this. Wait, we have made it through this.

I think the biggest most exciting thing was Chris and I got to have our honeymoon that we never had.

We went to the Philippines to see his family and me to meet them. I have a SON! I'm so honored to be a mom to his son.

Ken is wonderful and a delight. All of us cannot wait for his arrival. So, you see, things are slowly falling into place.

He has a heart of gold, wants to play Pro Basketball one day to help his country. Ahh, so sweet. Such a young age and already big wonderful dreams that will come true.

Alexis hasn't let her health problems get in the way at all of her art.

I seriously need to get a gallery for all of her art work.

I brought some over to share with the family on XMAS and everyone was amazed of her work.

I said, half of this is pre-brain surgery...and the rest is post, Not a bit of brain loss there! :)